Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Thursday, July 16, 2009

A blog I regularly read, Firstthings at Secondhandsmoke by Wesley J. Smith always makes me think. I do not agree with Smith all the time but even when I take exception to his words he makes me reconsider my views. For this reason alone, his blog is at the top of my reading list. Smith often effectively takes proponents of assisted suicide to task and yesterday he took exception to a stunning article by Barbara Coombs Lee of Compassion and Choices in the Huffington Post ("Healthcare Reform and the Price of Torture"). Lee's article shocked me. I understand reasoned debate. I understand why some people advocate for assisted suicide. I understand and do not like the fact that some people needlessly suffer at the end of their life. What I do not understand is fear mongering. Lee's article is designed to do generate fear--fear of doctors, fear of dying, fear of hospitals, generate mistrust, and drive a wedge between patient and health care providers. Who then can step in? Compassion and Choices who will lovingly end your life. This is is not helpful, indeed it is counter productive. How disturbing was Lee's article? Judge for yourself as I will quote a single passage that is indicative of the tone of her article:

Lee writes:

"In this country we usually torture people before we allow them to die of whatever is killing them --- cancer, emphysema, the multi-organ failure of diabetes or heart disease.Like the episodes of military torture from which our nation is recovering, medical torture reflects a culture and a set of assumptions. Reform is not about just identifying a few "bad actors" and weeding them out. Our medical-industrial complex follows a cultural paradigm to do as many things to people near death as is medically possible. Our broken system rewards that paradigm with fee-for-service payments.Standard routine is to torture those in the process of dying by inflicting upon them a host of toxic chemicals, invasive machinery and painful surgeries. It's the American way of dying --- agonized and prolonged imprisonment in an intensive care unit, pinned down under a maze of tubes and machines, enduring one medical procedure after another, unable to hold or be held by loved ones."It's an American tragedy, really. Every player in the medical-industrial complex is in on it."

The above words by Lee are designed to incite people's rage. No doctor or institution wants patients to suffer much less be tortured to death as Lee maintains. I know this as do most people familiar with hospital settings. In part this is why we have hospice's today--to provide end of life care designed to ease pain and suffering. In this regard, great strides have been made in the last two decades. However, this does not mean people do not suffer at the end of their life. But there are reasons, many complex variables, that go into a death that is difficult and painful. This is a discussion worth having, one that can benefit us all. Thus I find Lee's words extremist. Excellent exceptions exist. For instance, I recently read an outstanding book by Robert Martensen, a physician, historian, and bioethicist. His text, A Life Worth Living: A Doctor's Reflections on Illness in a High-Tech Era, is must reading for any person about to enter the crucible of the hospital or facing end of life issues. You will find no clear cut answers in Martensen's book just conundrums encountered by patients and physicians that will force you to think about the way we live our lives and the manner in which it ends. I have spent more than a few nights tossing in turning in bed thinking about the issues raised by Martensen. For this, I am grateful to Martensen. In contrast, I am disappointed with Lee and Compassion and Choices. Lee did not make me think, rather she made me wonder why she needed to use such extreme rhetoric designed to generate fear and mistrust. This is not advocacy. This is not nuanced debate. This is not constructive at any level. For me, Lee's article reinforces why the debate associated concerning assisted suicide is so frustrating.

Wednesday, July 15, 2009

In 2006 and 2007 I published two articles about the Ashley Treatment in Counter Punch. The articles generated a tremendous amount of email--as in hundreds upon hundreds of replies. Most email I received was positive but a few were shockingly mean spirited and bordered on hate mail. What I learned in the days after I wrote the articles in Counter Punch about the Ashley Treatment and growth attenuation was that people had a violent reaction to the subject. People were either opposed to what had been done to Ashley, that is they thought the child was mutilated by doctors, or believed it was perfectly logical and reasonable medical treatment. This juxtaposition of extreme views has always intrigued me and I have followed the Ashley Treatment as it has evolved sine 2006 when the story exploded in the news. I have tried to understand both sides of the debate, and there are only two sides--those for and those opposed to the treatment. No middle ground exists.

I will acknowledge that I have consistently failed to understand why doctors and some parents of children with profound physical and cognitive deficits are drawn to what I consider an extreme medical solution to a problem that is largely social in nature. Between 2006 and today, many articles have appeared in medical journals about the Ashley Treatment. Doctors no longer refer the "Ashley Treatment" and instead discuss growth attenuation. This change is more than a matter of semantics and in my estimation is an attempt to avoid the harshest critiques outside of medicine. I have tried to remain objective but nothing I have read has led me to believe that growth attenuation is a viable treatment option. Indeed, I remain convinced that growth attenuation is ethically questionable at best. Yet doctors, Douglas Diekema among others, seem driven to establish growth attenuation as a viable treatment option. I do not understand this forceful drive and was disturbed to read an article in Pediatrics by Diekema, David Allen, Michael Kappy and Norman Fost entitled "Growth Attenuation Therapy: Principals for Practice" (June 2009; 123:1556-1561). This paper seeks to establish the principals for growth attenuation in practice, that is provide the scientific rationale for the effectiveness of growth attenuation. The authors identify seven such principals for growth attenuation treatment:

1. Nonambulatory children with profound cognitive disabilities.2. Growth attenuation should be given the equal respect with growth promoting therapy.3. Families caring for a child with cognitive disabilities should be informed about growth attenuation in early childhood.4. Informed consent should give the risk and benefits of growth attenuation in both the short and long term.5. Potential benefits of growth attenuation adds a new dimension for precocious puberty for children with a profound cognitive disability.6. Ethics committee review before growth attenuation treatment.7. Growth attenuation should be part of a research protocol.

I do not in any way question the motives of the doctors who promote growth attenuation. I have no doubt they are trying to do their best for children and their families. I am equally sure that doctors regularly encounter ethical dilemmas that have no obvious or clear cut answer. I can also readily understand men and women of science who have dedicated their lives to helping people actively seek to fix medical problems both physical and cognitive. Yet it seems to me that those that are promoting growth attenuation are ignoring or minimizing the history of this treatment and its implications. Growth attenuation is a both a medical and cultural response to developmentally fragile children. Like it or not, once a treatment such as growth attenuation exists its very existence provides a reason to use it. The rationale for why it is or is not utilized will change. In this regard there are profound flaws in the paper that undermine the use of growth attenuation. Among them are the following:

1. Doctors have failed to provide an adequate definition of what a cognitive disability is. The authors of the paper acknowledge this fact and in terms of growth attenuation "define profound cognitive disability as including nonambulation and requiring assistance with nearly every aspect of daily living, remaining completely dependent on others for even basic care even after careful attempts at training, and the inability to understand or express oneself in nuance ways". This is a vague definition and I can readily think of multiple conditions that fit under this rubric. Thus I cannot help but conclude a specific population or type of child is being selected and considered for growth attenuation while all others are automatically dismissed. This leads me to ask why is it ethically acceptable to attenuate the growth of children with a cognitive disability but no other human beings? What does this mean culturally? To me, this is a strong indication that in spite of what the law may state people with disabilities are not valued. Any and all means must be utilized to "correct" their deficits. This is an extreme medical solution to an issue that is partly medical but largely social. By social I mean the utter failure of our culture to acknowledge the civil rights of people with disabilities.

2. Doctors assume the permanence of a cognitive deficit is life long before growth attenuation is permitted. That is they are making a "reasonable assumption" no change will take place. This is a significant leap in logic. Doctors are human and mistakes are made every day in every hospital in the nation. Of course we do our best to minimize our errors but they are simply inevitable. This leads to me wonder what happens if doctors make a mistake diagnosing a child with a seemingly profound and life long cognitive deficit? What will they say to this person when they are an adult? I realize the odds of this happening are remote but it is possible. Many of us know people who have been misdiagnosed, told they were terminally ill only to discover this was not the case.

3. The paper maintains that selecting children to attenuate their growth is a "separate issue". I think not. If seven principals for practice can be written out in detail surely a central component must be determining exactly who can and cannot be subjected to growth attenuation treatment. The selection process is a core issue that is brushed aside. As one blogger has noted "profound cognitive disability is only an alibi, a magic they use to turn something that would be regarded as unethical if applied to physically disabled children without cognitive disability into something that looks OK when it is applied to children with a cognitive disability".

4. The authors maintain that doing nothing does not lead to the best outcome. The authors have a point here and provide a child with scoleosis as an example. In this regard, doing nothing for a child with scoleosis is indeed not advisable--and I speak from experience having had surgery long ago. However, I fail to see how children with a profound cognitive disability can be harmed by doing nothing. And is this not what doctors are in essence supposed to do--"do no harm". Surely treatment options for children and adults with profound cognitive disabilities exist that will render them medically stable.

5. To date, growth attenuation is limited to treating female children. There is a half a century track record of treating female children with hormones and the debate about the safety of this treatment is far from resolved. Medical attempts to alter the height of children remains controversial and has a checkered past. For a critical study see Normal at Any Cost. Although written by non academics the text provides a cautionary tale and contains a wealth of references.

6. The authors believe that adequate legal protections are in place to protect children that will be considered for growth attenuation. This is subject to debate. These legal protections did not protect Ashley who was unlawfully sterilized and added safe guards needed to be established. Assuming legal safe guards exist is simply not true and ignores a long history of violating the sanctity of disabled bodies in American history. I need not review the history of the Eugenics Movement here and will simply point out that tens of thousands of people were sterilized against their will. Ignoring this past as unpleasant as it may be sets a dangerous president.

None of the above flaws broach the subject of whether growth attenuation solves the quality of life issues it is designed to eliminate. Here I refer to the reduction in the ease and problems associated with caring for a person with a profound cognitive disability. This is not what I think medicine should be concerned with--social issues that have non medical solutions. Those solutions, providing adequate resources to families caring for children with profound cognitive disabilities, would exist if and when we value the lives of those individuals. Medicine and growth attenuation can change the human body but not the inherent cultural problem we are confronted with.

Sunday, July 12, 2009

In the past I have posted a number of entries on assisted suicide. The well funded, organized, and influential groups that advocate for assisted suicide laws in this country and abroad have enjoyed great success in the last few years. I find their success deeply disturbing for many reasons foremost among them is the logic that provides the theoretical and practical basis for assisted suicide laws deeply flawed. On the surface, the laws that advocate for assisted suicide make sense. Surely no one wants to see a loved on, or any human for that matter, needlessly suffer when death is inevitable. The fact is we humans are living longer thanks to modern medicine and as a result horror stories about the end of life abound. However, when the emotional angst of the assisted suicide argument is removed and one takes a long hard look at end of life issues two facts emerge: first, assisted suicide laws are not necessary and, second, the people who take advantage of assisted suicide laws or the "services" of groups such as Dignitas are not terminally ill.

I have no doubt advocates for assisted suicide completely disagree with my assessment. The debate between those for and those opposed to assisted suicide is not resolved, their disagreements long long standing, and I see no reason to believe common ground can be found. This is unfortunate because too many people needlessly suffer before they die, a situation that must be resolved. But killing people, what assisted suicide seeks to do, is not the answer. Thus it is imperative that the two sides of this debate seek common ground and this is where I think scholars in disability studies and activists in disability rights have much to contribute. Yet such activists and scholars within the field of disability are hopelessly divided, a thought that came to me after reading two fascinating and pointed commentaries by Stephen Drake of Not Dead Yet (see Not Dead Yet blog for Wednesday July 8 entitled "Tom Shakespeare Makes a Less Than Honest Case for Assisted Suicide") and Tom Shakespeare, a British disability studies scholar (See "A Chance for Dignity and Dying", Guardian July 7).

Drake and Shakespeare respective views are radically different. Readers of this blog will likely know Drake's work via Not Dead Yet. Drake is along time and influential advocate against assisted suicide. I consider his blog Not Dead Yet to be mandatory reading for anyone interested in the subject. My views are very similar to Drake and I have the utmost respect not only for his advocacy but his writing. I have a similar respect for Shakespeare but often find myself at odds with his views--at least since 2000 when he made a controversial break with disability scholars in Britain that culminated in his highly polemical 2006 book Disability Rights and Wrongs. Between 2000 and the present Shakespeare has come out in favor of legalizing suicide for terminally ill people. Shakespeare has also been extremely critical if not disrespectful of disability advocates and scholars that oppose assisted suicide. Thus I consider Shakespeare to be the "bad boy" of disability rights scholarship. He is without question a contrarian, one who is not only very smart but seems to take delight in holding views that are at odds with the majority. Shakespeare's views on assisted suicide and the social model of disability are two examples. While I do not agree with Shakespeare's views on assisted suicide he must be taken very seriously. This is why I was delighted to see Drake dissect Shakespeare's editorial in the Guardian in which he advocated as a disability rights scholar for assisted suicide. Like Drake, I found Shakespeare's position and arguments weak and misleading. I also agree with Drake that Shakespeare is simply wrong in advocating for effective assisted suicide legislation in Britain. However, I think Drake could temper his critique because writing that Shakespeare's editorial relies on "easy platitudes, fuzzy assertions and some pretty gross misrepresentations of euthanasia laws" only heightens an existing divide between the two men. In my estimation Drake is correct in his assertion about Shakespeare's editorial in the Guardian but neglects to point readers in the direction to Shakespeare's aforementioned book, especially chapter 8 on "Autonomy and the end of life". Instead of going for the jugular in his pointed critique of Shakespeare I wish Drake had stuck to the facts--they are not only in his favor but on the side of any reasoned argument against assisted. For instance, Shakespeare is clear on the fact he favors assisted suicide for only those who are terminally ill. Yet Shakespeare does not in any way define who is and is not terminally ill. This is not a matter of minor debate but a central issue that gets to the core of assisted suicide at a practical and theoretical level.

Both Shakespeare and Drake know all too well that people who are not terminally ill have had assisted suicides. The case of Daniel James that I have written about in the past is but one of many examples. James death was heart wrenching and highlights why disability rights scholars and activists need to play an active role in the discussion about assisted suicide. Like it or not, people with disabilities are not equal, face overwhelming social stigma, and have a great deal of trouble accessing basic and even substandard health care in this country and abroad. The consequences of these social inequities are profound and place people with disabilities at a high risk. A high risk for what? I can readily envision a world in which it would be all too easy to classify a host of medical conditions as "terminal". People with ALS, MS, SCI, and a host of other debilitating but not life threatening conditions could be deemed terminally ill. Why think of the savings! No wheelchairs would need to be manufactured nor would ramps or elevators be required. If you think I am kidding, you are very wrong. In my lifetime I have witnessed profound changes in the way people with SCI are treated. When I was paralyzed 30 years ago people with high cervical injuries, think Christopher Reeve, died. They did not die from their injury but the belief no person with a high level cervical injury could ever have a good quality of life. Hence such people died of neglect and doctors let "nature take its course". This is both misguided, dangerous and has significant implications for all those that are disenfranchised--the elderly, disabled, chronically ill among many others.

Shakespeare concludes his Guardian editorial by noting that all people, those with and without a disability, should have control over their lives as well as how their life ends. He also pointedly states "being disabled in itself is no reason to die". I do not disagree with these statements but know that in theory Shakespeare may be correct but the reality as I know it is very different. We do not all get to choose the way we die nor are we born equal. We also all have limits, social and economic, that dictate where and how we live. This has an impact on how we access health care and how we end our life. I for one fear old age. I do not fear aging and infirmity. I know all too much about the limits of the human body. What I fear is the lack of social respect and value my life will have as I age. I wonder will the fact my body is not easy to care and labor intensive hasten the end of my life? Will I die of a giant bed sore because the people charged with my care do not have the time or will to regularly move my body if I am no longer capable of doing this? Will my inevitable death be perceived as a release from being paralyzed and hence receive substandard care? These fears are very real and shed light on a social problem that people with disabilities must be a part of in resolving. It is why we must be part of the debate on assisted suicide--we have unique insights that others do not. We are accustom to defending our rights, that is our very right to exist and escape what Harriett McBryde Johnson once described as the "disability gulag". All our voices need to be heard--people like me via my blog, Drake via Not Dead Yet and Shakespeare in spite of the fact I do not agree with his views.